Message from Rosemary

[Barbara Davis]

I'm so very sorry to hear of the negative results. However, don't forget that even a negative result tells you something important - if only what treatment NOT to try. We underestimate the importance of negative results. Scientists and doctors rarely write to journals to say a certain experiment or treatment did not work, but in fact we lose a lot of important information because they don't. I know it must be enormously frustrating for you not finding the cure you so badly need, but Monday's results were still an important piece of infomation.

Falling down dying in the street? I suspect the vast majority of us get such fears increasingly often as we get older. It's a real bummer for you, I know, having all the health problems you do, and many of them starting so young, but you still have a simple choice - to deal with those fears the way the rest of the human race does, or don't deal with them. But, and I suppose you won't want to hear this, it sounds very much to me as if you are badly depressed - and I speak from experience here.

Love and hugs - and apologies for the blunt speaking,

Barbara xxx

[Andrew MacLean]

Rosemary

I'm with Barbara, and we both have you in our thoughts.

I can only guess at how frustrating and distressing this must be for you. Your steroid sensitivity must be particularly difficult, although a chronic fatigue specialist may just be able to help find a way for you to move forward through your present low energy levels.

It is especially hard to cope with low energy levels, poor sleep and hallucinations when you have been active and engaged with the world.

I don't know if it is any help, but however bleak the world gets for you there are friends here who want to draw alongside and share the moment.

Every blessing

Andrew

[Barbara Davis]

Bon Appet..... no, sorry, wrong one.

Courage, mon brave...... if only because there really isn't any other choice.

Love, Barbara

[GarethB]

I learnt early on in my science carear that positive and negative results are equally important, it is these which eliminate one route of investigation and push us down another avenue.

The whole process can be long and drawn out but eventually you arrive at a conclusion.

Hang in there and hopefully you'll get the answers you are looking for.

[rosemary johnson]

Over the last few days I have tried umpteen times to reply here.
Each time, computer has frozen and lost it.
tried again to day.
Froxe in mid-message twice, and once on log in screen. two ctrl-alt-dels.
so maddening.
Is it any wonder I vary between wishing I'd died on that damned operating table, and wondering if I did and this is hell.
Sure feels like it at times.
Will post this and put reply in separate little messages.
Rosemary

[space_cadet]

sweetie take your time, technology sucks a lot of the time, I found that kicking desktop towers generally results in bruised toes and more damage to me than the pc! head hitting desk has similar disadvantage in my case more injuries than me than it.

We know you are trying your best and that is all anyone can ask of you.
xox

[rosemary johnson]

Well, I MIGHT know what wasn't wrong - if they'd actually told me all they'd tested for.
ALl I know is that, on two days in July, my urine-free-cortisole levels were within normal brrange.
I think the other two recents sets ncluded adrenaline and testosterone.
I can guess those twoo also were in the normal ranges.
As Dick francis regulars will know, normal range can include wide variations.
AActually, other things I know are that, on a particular day in May, I was low on iron and low on Vitamin D. These are being retested.
ANd he said on same day, my ACTH levels were high - or highish. Or at least, high enough he didn't think I had Addison's disease.
Doesn't really help much!
I can guess they may have tested that I wasn't diabetic or have low thyroid - but they haven't actually said that.

None of which is terribly helpful!!

Will let Hilary comment on scientific reporting of negative results if she sees fit!

Rosemary

[space_cadet]

I was told in 2004ish my thyroid was low, erm yes medics, that is why you also said weight loss would be hard, but since 06 I have lost about half what my body weight was, put some back on when settled in my happiness thanks to Ben, but since Jan have lost about 4-5 stone. Now a size 12-14, not wasting a way subject to what one of my cousins claimed earlier on today, I still eat junk, but am happy with myself and life - makes a difference to health I find.

Hope you get the answers you need soon hunni x

[rosemary johnson]

As regards the prospect of collapsing in the street, or wherever, and dying:

I have so far more-or-less collapsed 7 times.
On three of those, I was lying in a heap on the floor, shivering and shaking, unable to move and struggling to talk coherently or even at all, and barely audible.
Two of those occiions I ended up ni A&E (niether of which had a clue what to do).
THe third I should have done, but is it worth bothering???
The other four, I couldn't have defended myself from any possible ne'er-do-well. Or stampeding horse.
On a number of other occasions, I've felt myself rapidly running out of energy, getting slower and slwer and more fuzzy-headed, and only managed by will-power to drag myself to somewhere I could sit, rest, shelter, get cup of tea, etc.
After 7 actual collapses, and those near-misses,
is it that irrational to think there is a very real risk it may happen again?
Expereince of A&E is such as to make me wonder if called 000 is worth it.
sorry 999
What do I tell them that will make them do any different in future??
- serious question, serious answers welomed.
Do I ask my firends to call an ambulance if I collapse again? Or what?
Further:
I live in a highly deprived area with crime rate, and fear of criman danti-social behaviour rates, to match
QUite a lot of this is drug related , or stealing to buy drugs related.
I live near a couple of infamous rough estates.
Is it that irrational to think that someone collapsed in the stret near here is more likely to e regarded as 1. easy robbery target by the ne-er-do-wells, and 2. an undeserving druggie by the more law-abiding?
- albeit the typical local druggie may not be 48 white and female! (seems to be ore a crime of the younger parts of the population here, in which whites are a minority as it happens).
Yes, there are the good types, and maybe someone would help and call that ambulance whose utility I qury.
But don't believe that could be guaranteed.
Also:
I go to vitist the horses on a farm which is 10 minutes walk from the nearest real road up a farm track.
The horses go out in, and have to be caught and collected from, a large, steeply sloping field which is much colder and windier at the bottom -
Guess wher ethe horses tend to congregate? - yup, at the bottm, far end!
If I'm collapsed at the bottom of the fild (maybe after chasing horse who doesn't want to be cuaght) I could be there a long time before anyone misses me and nd another long time before they could find me.
Or on the track - not many come and go.
WInter and cold and dark is coming on.
Is it that irrational to think if I have another collapse, which I'm not convinced is not a reational concern, it could be very nasty, potentially, quite seriously, fatal?
Rosemary

[rosemary johnson]

Thanks for the best wishes, Lea.
Agreed computer bashing not going to help - the problem isn't at my end - it's somewhere betwen Demon and the online browser service Itelnet into.
Not my trusty laptop at fault as I haven't changed anything here.
Just very frustrating!!!!!!!
WOuldn't be totally surprised at thyroid problems, as they run inthe family - but GP has tested before, several times.
Ditto fsasting blood sugat levels.
Am intending to request copies of medical records from the hospital, so will see complete list there, I hope and trust - and anything else interesting.
As regards low eenergy and hugh wieght -
Problem is not just energy levels - it's muscular wastage, weakness and lack of stamina.
From the reaction to the initial dosage of steroids.
All too common in people who have transplants - or steroid meds for other reasons.
Muscular weakness/atrophy.
Am trying to continue to do anything with weakened muscles that exhaust easily.
Harder work and very very frustrating.
Was trying to get them exercised and working, and build up strength again after op. Then combination of roken rib then "flu" last winter set back the getting-fit programme again about 6-8 months.
Keep trying, but every steroid hormone increase pusheds it back again.
DOn't know whether to look for a physio, or what.
Have NOT!!!! the strength for gyms.
Even if could stand the HORRIBEL NOISE!!!!!!!!!! that wafts out of them.
Fatigue is NOT unexplained - it's mainly result of trying to get anything done with wasted muscles.
Weigh gain also stemmed from op steroid dose .... and hard to shift when so exhausting to exercise.
Danny (stable manager) thinks I'll losing weight. Or at least looking thinner.....
I wish!!! - he thinks I may be turning flab into muscle again I hope so but am not convinced. THink it's just shifting from legs to wasit!
Troble is .... I get hay fever. Which sets off the asthma.
I'm allergic to horses. They set off the asthma.
Asthma -> inflamed airways.
Can't use the anti-inflammatory asthma inhalers a they're steroids.
and Inflammation -> raised cortisole levels.
cortisole is a steroid.....
I'm sur ethey're within the normal range of levels.
And I'm just hypersensitive tothe stuff.
Like I'm just hypersensitive to bright light.
Which the bloody graft ahs made worse.
was the bane of my life before, now even more of a problem.
graft worse than useless.
Even if I ahd 20/20 vision, what's the use of that if you can't go anywhere cos of bright lights or,things that make my life a real misery, FLASHULBS!
But had more usuable vision from that eye before the op than now. Noreal usable distance vision.
Just when I have acquired a pony to harness up and drive (when he's old enough).
An ought to have some decent vision on the side the traffic comes past.
The other cause of the fatigue and exhaustion, of course, is sitting up half the night trying to keep the bloody steroid-induced hallucinations at bay with crosswords, etc.
What has happened tothe BBC WOrld Service?????????
- radio inthe middle of the night bears no resemblance to what I used to listen to. Where is the gravitas of "THIS is London"? Where is Lillibolero and the radio News Reel?
Still getting the odd food fads and the periods of nausea too, and other things.
ere's an oddity:
a few weeks ago - well, months, actually. I let Duke escpae my clutches somewhere between his stable and the field.
He was running around madly, from field gate to yard and up and down the fence.
Resisting recapture.
At one stage, he kicked out sideways at me as he passed. One back hoof connected with each thigh and I went flying backwards and landed in a clump of stinging nettles flat on my back.
I had bruses in patches on right thig, and a very clear - half-a-horsehsoe shape bruise on left leg.
I now can feel where the helf-horseshoe shape bruise was on left leg as they is a hollow - - a halGf-horseshoe shape valley where the bruis was.
Actually, I can still see the darker patch where the bruise was.
Danny can feel the valley through my jodhpurs, says it's muscle damage.
ANyone heard of anythign liek that?
Anyone any ideas what to do about it? - will it recover, or......?
Rosemary